Nobody ever says the word.
Tuesday night was quiet. I never heard from Joanie until about three that morning, when she called for me. All she wanted was another hit of Dilaudid for the pain. I also gave her another Atavan and then she went back to sleep.
At seven the next morning, when I got up, she was still sleeping, and I didn’t wake her. After I took a shower and shaved, I took care of the needs of Bailey and Brandy, and Peggy came over so I could go for coffee.
The Home Health crew came about 11:00 that morning to do their thing. They changed the bedding, gave her a bath, or what they called a bath, took her blood pressure and temperature, and prepared to leave.
I followed them out of the house, and in the driveway, Dorinda and I talked about what she saw. By this time, we both knew this wasn’t going to end well, and Dorinda expressed some concern to me about the fact we hadn’t made the shift to Hospice. The implications of that gave me some legitimate concern as well. As I understood it, as long as she was on Home Health Care, and not Hospice, and something were to happen at home, like her breathing to stop, I would have to call 911 and they would come and do emergency measures, like taking her to the hospital to try and revive her, which I thought would be cruel and unusual treatment, since there would be no point to it except prolonging the agony.
Hospice, on the other hand, would mean that if the same thing happened, I was to call a certain number, and they would send some people over to begin handling the details. They would handle everything.
I knew what had to be done, but at the same time, Joanie was still clinging to the hope that had sustained her through the dark times over the last 12 years, and it was going to take some doing to finesse the move to Hospice. I told Dorinda we would leave it lay for a few more days, and then see what we could do.
Part of my reluctance, I suppose, was that I knew she was dying, and for as long as I had known it, it didn’t make any difference.
The dynamic that comes into play at this time in a critical situation where someone is dying, is simply this. Nobody says the word. Even when Dorinda, who most certainly knew Joanie was dying, she was in the business of knowing, would talk, the words would sound more like this, “I don’t know how she keeps going,” or “She is really strong, and is hanging on.” Except for my friend Wayne, I never used the word myself. Wayne had been through a death watch with his wife Karen, and I did use that term when he and I would talk about what was going on. I never did with anyone else.
I found it was easier to say when asked how she was doing was to simply reply, “She is hanging on.” That seemed to be sufficient, but I think those who had seen her recently, or talked with her, could understand the subtext was that she was dying even though I never used the word.
I had been on a death watch one other time in my life, in 1987, when I went to Carrington just after Memorial Day when my mother had been admitted to the hospital. She had uterine cancer, and had refused any treatment after her surgery in 1986. The first thing I had to do when I got there, was to meet with my youngest sister Joni, and mom’s doctor. He told us she wasn’t going to get out of the hospital. She was dying, and he wanted to know what steps to take next.
Joni and I took a few minutes to ask him some more questions, and then we told him her wishes were that there be “no extraordinary measures” taken to extend her life, and that she should be kept as comfortable as possible. That was a hard day, and both Joni and I talked about how hard it was to make that decision.
I stayed in Carrington that summer, with the exception of one weekend when my sister Jane and Joni came up to spell me, I came back to Bismarck for the Fourth of July and somewhat of a normal time.
I guess the point of this aside is that I had seen this before, and even then, with the exception of family the word was never spoken. It was always in the vein of “She’s doing well, all things considered,” or “She’s tough and strong.” But never saying she was dying. Mom’s body finally gave up around mid-July, and the one positive thing I did get out of it that she was able to talk almost up to the point she slipped into a coma the day before she died.
Joanie’s current situation on the 2nd of April was simply this. It wasn’t good, and it was going down hill. That was the way it was looked at, especially by her friends. From the clinical view of the doctors and nurses, she was dying, though the word was never said.
That Wendesday, her boss, Gov. John Hoeven and Mikey came to visit over the noon hour. Mikey brought me some of her fabulous Texas Sheet Cake. They spent some time visiting with Joanie, and when they left they most surely knew things were not going well, but the word was never said.
Maybe it is a good thing that we try to soften the cruel reality with the euphemisms we use. Perhaps it is just our way of trying to cope with the inevitable loss of someone we love.
Maybe that’s why we never say the word except to certain people, and maybe that’s reason enough to not use it.
I didn’t go to the bedroom to sleep that night, choosing instead the couch next to her bed in the living room. I put the music on so it was just barely audible, and tried to not even think about the word. I had thought about it enough.